This profile is particularly poignant, because just a couple of days ago Marianne shared some encouraging updates about her recent spinal surgery. Many of you may know her as the “lady in the wheelchair” who was heckled at a town hall meeting this past August. That description may not fit for long, though. Marianne walked in on her own, with cane and husband in hand, to her most recent appointment with her surgeon. Please join me in wishing Marianne the best as she continues with her surgical recovery!

5 years, along with Sjogren’s Syndrome, Fibromyalgia and degenerative disk disease, all related to RA.

What advice would you give to someone who has just been diagnosed with RA?

If you have not already learned to love yourself, now is the time. Learn to give yourself compassion for how you feel, permission to grieve, self loving words to lift yourself up. Get yourself a doctor you can talk to, and one you feel comfortable calling in between appointments. Flares do not always keep the same schedule that you do.

And of course, you need to educate yourself about the illness and all of your treatment options. It is also very helpful to bring someone with you to the doctor appointments. A trusted friend or family member can take notes while the doctor is talking. It is easy to become overwhelmed with all of the new information and treatment options, and easy to forget something important.

Do you use any mobility aids?

A cane, a wheelchair and my husband.

How has living with RA helped to improve your life?

Living with RA has allowed me to see the love and devotion my husband has for me, in a way I never would have if I were healthy. It has allowed me to make so many new friends, and be part of a community of strong people, who accept me just as I come, and who know…. They just know.

Do you have any visible signs of RA?

I have a widespread rash called Granuloma Annulare, which lays across all of my joints , torso and extremeties. A fresh spinal surgical scar, and very sensible shoes, as I have had to give up my beautiful collection of sexy high heeled shoes and boots from my trips to Europe. And about 30 extra pounds on my former trim athletic frame.

Can you please describe some of your favorite coping strategies for living with RA?

I watch my inner dialog, and am careful to say loving, compassionate things to myself. I allow myself a day or so if I need to grieve, but I do not isolate. On those days I make myself reach out to others who are living with RA. That is always validating and comforting, and helps me pick myself up and move foreward.

I focus on what I can do, instead of what I used to be able to do, and if I stumble, I tell my husband, who practically throws me a party if I tell him I folded a load of laundry. I was one who always set the highest goals for myself, and had a “no mercy” attitude about my own accomplishments and perceived failures. Now, I spend more time focused on what I am grateful for, and I am learning the strength of patience.

Periods of chronic pain can make me selfish, as it robs me of any ability to see beyond myself, and getting through each moment is hard labor. I am careful to thank my husband if he has to do extra, and let him know he is appreciated. My RA is a family illness, and we are a team. Before every doctor appointment, we sit together to discuss what to say to the doctor, and my husband writes down a list of questions. He also looks up the side affects of new medications. Some of these practical tasks allow him to be an active participant, and make him feel like he is helping and contributing. In this way, we have been educated together about RA and we overcome it together.

Can you please describe your current medical (traditional and alternative) treatments?

When I graduated from school, I was armed with a good education, a strong faith, a deeply embedded belief that we are all our brother’s keeper, and fluency in more than one language, thanks to my parents. I saw the whole world as my place to play, and I wanted to see all of it. I studied at University in Italy , took corporate jobs with international companies so I could live overseas, traveled and made art. There were some very hard times, like the death of my dear father, my mother’s homicide at the hands of a loved one, but I worked always at becoming the best person I was able to be from what life had to offer.

My life experiences so far have taught me to focus on what is beautiful in so much ugliness, and that God graces us even in the worst of times if we are willing to see it. Having been physically fit in my adult life, a weight lifter, runner, hiker, scuba diver, I am learning to live in this new body, and learning how to love what I have been given. With the blessing of close friends, two big dogs made of pure love, and my husband, I am finding God’s grace even in the midst of chronic illness.

What advice would you give to someone who has just been diagnosed with RA?

Learn as much as you can about it and be as aggressive as possible with medications right from the start, regardless of the severity of your case. The disease only gets more resistant with time and you need to knock it out ASAP.

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

It has forced me to slow down, live for today, and enjoy simple moments much more. I enjoy my children and my wife a lot more. I try to surround all of them with moments they will never forget, try to do things with them that become traditions, etc.

Do you have any visible signs of RA?

Bilateral knee replacement scars, finger deformities, elbow replacement scar, wrist replacement scar. Luckily I have had good surgeons so I am told I have really nice scars! I tell my kids I am a scar collector.

Can you please describe some of your favorite coping strategies for living with RA?

I always pride myself on having a short attention span. So if I am upset or sulking I know within a minute or so I will be thinking about something else and forget all about what was upsetting me.

Can you please describe your current medical (traditional and alternative) treatments?

Imuran, Remicade (going to try Rituxan), and heavy doses of prednisone. I have rheumatoid vasculitis as well as RA so the heavy prednisone is important to keep this at bay.

Is there anything else about yourself that you would like to share?

I am the proud father of 3 wonderful children as you see in my pictures. I have been out on disability from work since January of this year and God has blessed me with the opportunity to spend much more time with these guys and I am making the most of it. I have been married for 15 years to the most supportive and wonderful woman in the world – she’s my best friend and without her, I couldn’t be half as positive as I am.

34 + years (Diagnosed in 1975 with JRA, at the age of 2 but probably had it since birth.)

What advice would you give to someone who has just been diagnosed with RA?

Don’t let anyone else set your limits. You can set your own limitations-YOU are in control. Do a lot of research, reach out to blog sites, RA groups and maybe a local chapter. If you don’t like your treatment plan, work with you doctor. It is you body and you know it best. What may work for some, certainly doesn’t work for others. Communication with your doctor is essential; just because he prescribes something doesn’t mean it’s meant for you. Be your own advocate!

Do you use any mobility aids?

No, but I have after recovering from surgery. I used a sock aid, a platform walker, crutches and those reachers/grabbers….to be honest, I still use my reacher-I’m only 5’5 I still need to use it to grab things that are out of reach or sometimes I use it to kill spiders that are out of reach, lol!

How has living with RA helped to improve your life?

I have developed and incredible sense of empathy, compassion and loyalty towards others. If I see someone in pain, I am the first one there to help them. If I see someone who needs assistance-I will offer mine. If someone needs a shoulder to cry on-I’ll give them mine. I am most thankful for those qualities.

This disease takes SO much away from you but it has also given me so much strength, and courage for one person I feel like I could conquer the world if I needed to. I have the drive and determination to get through anything. Without RA I don’t know if I could do that.

Can you please describe some of your favorite coping strategies for living with RA?

If you are having a bad day, talk to a good friend, relive fun memories or cry it out. Just remember to take it one day at a time. It may take awhile but sooner or later-you will begin to feel better. I know I am stronger for having RA and I know I fight a good fight everyday but we all get knocked down, it’s up to us to pick ourselves back up again.

Can you please describe your current medical (traditional and alternative) treatments?

Two tablespoons of Tart Cherry juice concentrate daily, Calcium, Vitamin D, the occassional massage and acupunture treatment as well as Humira, Imuran and Mobic.

Is there anything else about yourself that you would like to share?

I am the type of person that if you told me I couldn’t do something, I would do it anyways out of spite. That’s the determination in me. I have had RA for 34 years but I refuse to let RA have anymore of me then it already does.

What advice would you give to someone who has just been diagnosed with RA?

Seek out a good rheumatologist quickly. I know it is a scary time in your life but seek treatment immediately. The longer you wait, just means that more irreversible damage is being done to your body. I put off going to the doctor for a while thinking I was just feeling the abuse that racing motorcycles had put on my body. When I did go to my GP about my pain, I was improperly diagnosed with synovitis and was only taking Aleve for a year before changing GP’s and discovering I had RA.

Also, do your own research on RA. Library books, magazines, the internet, use all resources to learn everything you can about RA. And remember, everyone is different … what works for one person may not work for you, but don’t get discouraged. There are lots of options so talk with your rheumatologist about them.

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

It has made me slow down and appreciate the day to day things that I so often took for granted. A sunrise or sunset, a fresh snow, the list is endless. Pre RA days vs today is almost equivalent to black & white vs color for the way I view life now.

Having RA is not the end of the world, yes your world changes. You still enjoy life and those brief moments that you can do something pain free make you feel like your on top of the world now.

Do you have any visible signs of RA?

My fingers and toes are hooking and turning. It’s not unusual for my hands to swell at work. I also walk with a slight limp from the damage done to both of my feet.

Can you please describe some of your favorite coping strategies for living with RA?

I think the best strategy for me has been to to stay focused on something else, such as my motorcycles, blogging, working out or even work. Your mind is a powerful tool, use it to your advantage. If I sit down and start thinking about the pain, before long, I am hurting worse. I don’t have time to hurt worse. If you can, get up and do something to keep your mind occupied. I still exercise, however, there are some days when I just hurt too bad, so I don’t. I don’t worry about it, nor do I feel guilty like I did when I was younger and healthy.

Can you please describe your current medical (traditional and alternative) treatments?

I take five 2.5 mg Methotrexate each week, two 1 mg Folic Acid each day and one Orencia infusion each month. (Enbrel did a good job for me for 5 1/2 years but suddenly the Enbrel just wasn’t working for me any longer. I have just recently switched to Orencia.)

Is there anything else about yourself that you would like to share?

I would like to invite you to check out my blog: Dual Sport Life. It is written from a personal impact point of view on day to day life with RA, plus I write about some of the rides I go on from time to time.

I have always been very active with football, baseball, racing motorcycles and riding bicycles. I have broken 14 bones, had 3 concussions and knocked one front tooth out. Mentally I am ready to get back out and start racing again, but my body can no longer take the physical abuse from racing for 3-4 hours at a time.

My daughter and I love music, mainly rock and blues, so we go see shows together when we can. It has become a strong bond between us and it makes me smile now when I get an email from her about an upcoming show…I know she is wanting to go.

A few weeks ago, Rheumatoid Arthritis Guy wrote an Open Letter To Arthritis Today, in which he asked the editor of that publication to please increase the visibility of men living with rheumatoid arthritis.

A lot of comments were received in response to the above post, both here on my blog and in a discussion thread at RA Connect. In addition to the issue of gender representation, readers also raised concerns about the accuracy of overall depictions of people living with rheumatoid arthritis. Quite often, the reality of our lives includes mobility aids, visible deformities, physical challenges, and emotional challenges – and these are often not reflected in the words and images that we find in different forms of media.

Just as I believe that each one of us has the power to raise awareness of this disease with which we live, I also believe that each one of us also has to power to contribute towards creating this accurate depiction of people living with rheumatoid arthritis, that has been missing up until now.

So today, I would like to present the first of a regular series here on my blog: Real Profiles of Rheumatoid Arthritis. Rebecca Fleming has generously offered to work with me in creating this inaugural profile. I look forward to profiling many more people in the future!

What advice would you give to someone who has just been diagnosed with RA?

Start treatment right away. In order to slow down the progression of the disease and to protect your joints from as much damage as possible, get on a TNF inhibitor or a DMARD right away.

When I was finally diagnosed in 1980, my treatment was six Bufferin a day. By 1984, my treatment was 1,600mg of ibuprofen per day. I was not put on a DMARD until 10 years into my disease. By then, a great deal of irreversible damage had already been done.

I would also advise newly diagnosed patients to become as knowledgeable as possible. Read books, do research, go to trustworthy websites (such as the Johns Hopkins Arthritis Center or the AF) and educate yourself on RA. Educate yourself on medications and their side effects. When your doctor orders bloodwork for a CBC or a sed rate, ask him/her what that means and why they’re doing it. No matter how good your rheumatologist is or how supportive your family is, this disease is your’s. It’s happening to your body and you must work to protect it.

Something else I would suggest – let go of perfectionism. Because of our disease, we are limited. I can’t workout at the gym 5 days a week. I can’t vacuum my house and scrub the shower like I want to. I can’t chop and slice and dice food to make a fabulous dinner for guests. Therefore, I don’t have the body I’d like to have, my house is never as clean as I’d like it to be, and if I have people over, they have to eat store bought hors d’ouvres rather than something homemade. And I have to let it go. Easier said than done. After three decades, I’m still struggling with this one!

Finally, I would also suggest rest. Rest is underrated. Rest is a low priority for most people. I actually schedule my resting. If I have plans for Monday and Tuesday, I make sure to block out Wednesday as a rest day. If I don’t, I will pay the price later on and wind up in bed for four days instead of just one.

I understand that people have to work or have children to care for, so it’s hard to schedule time to rest. But often times we don’t schedule rest days because we don’t want to miss out on an activity or have “things to do”. After 30 years of living with RA, I’ve learned that if I don’t schedule a rest day, my body will do it for me and it won’t be pleasant!

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

It has made me a much more compassionate person. I care about others and have spent my entire adult life working and volunteering to help others. Without RA, I think I would have been a very self-centered person who placed value on all the wrong things. Picture Alicia Silverstone in Clueless. That’s who I think I would have been without RA! J

Having this disease has also made me thankful for what I already have. I can walk and see and hear. I have a caring family, a roof over my head, and food on the table. Those are things that should never be taken lightly or taken for granted, yet most people do. Thanks to RA, I’m not one of them.

Do you have any visible signs of RA?

My hands are pretty deformed from arthritis. My fingers are knobby and veer off in different directions. My hands look permanently swollen. They also have big scars running down them from the surgeries I’ve had to repair torn tendons due to RA. While my feet look pretty normal, some of my toes are deformed just like my fingers. Other than that, even after 30 years, the rest of me looks fairly “normal”.

Can you please describe some of your favorite coping strategies for living with RA?
Well, I have tried just about everything. A lot of the popular strategies (meditation, visualization, yoga, even prayer) have not worked for me for one reason or another. I’ve had years of therapy and that has helped tremendously. It gets expensive, but it’s worth every penny.

I suppose my favorite strategy is distraction. I try to focus on something other than my pain and disability. If I can get out of the house, I do. I socialize as much as possible. If I am alone, I’ll try to read a book or watch a movie. To have my mind think of things other than my RA is a great coping mechanism for me.

Can you please describe your current medical (traditional and alternative) treatments?

Currently on prednisone, but trying to taper off. I’m hoping to get off prednisone and return to Humira soon. Humira worked really well for me.

Is there anything else about yourself that you would like to share?

One thing people need to remember is that the stereotype of the arthritis victim – the old woman hunched over in a rocking chair – is a myth. I’ve had RA since I was 11. I’m still only 41 (they tell me that’s still considered young these days! J).

I like to have drinks with friends. I can’t leave the mall without at least buying a lipstick. I’m a rocker chick with a tattoo who worships the Rolling Stones (I’ve seen them 10 times in concert and will be airlifted in if necessary!). I’ve been married for 10 years to a man who makes me laugh hysterically and we have a little dog I rescued who is completely crazy and we adore her. And I have RA.